Nani's great adventure

2010-02-05T08:38:00.000-05:00

Dear Family and Friends,

We've experienced some difficulty keeping everyone current with Suzie's progress via the blog: some are unable to find the site, some are unable to log on, some have been unable to post comments and no one is aware that an event is taking place unless curiosity leads them to visit the site.

We've decided to close the blog and create a website on CaringBridge, a free, nonprofit web service that connects family and friends and facilitates their ability to share information, love and support during a serious health event. When an event takes place in our lives that is of significant joy or concern, we will update the journal on our Caring Bridge website. The beauty of CaringBridge is that they notify those who register whenever a journal update is posted. This notification will contain a link to our website, thus making it easier for us to keep you informed and for you to follow Suzie’s progress.

To register for these updates you need to visit Suzie’s website. There are two ways to accomplish this:

1. By clicking the following link

http://www.caringbridge.org/visit/nanisgreatadventure

2. By visiting CaringBridge at www.CaringBridge.org. and entering the name of our website: nanisgreatadventure

Feel free to contact CaringBridge if you have questions about using the site or if you need assistance.

We're hopeful that this process works as well for you as we envision that it will for us.

Love to all,

Mike

2010-01-14T20:08:00.002-05:00

The more things change the more they stay the same. Suzie continues getting stronger--she's able to get around the house by holding onto walls and furniture, using the walker only on occasion. She cooked dinner this evening and has spent a lot of time the past few days working on her crafts again, always a good sign. Ironically, GVHD is coming on strong, started this afternoon, which means that doctors will, once again, increase her prednisone. Too much prednisone, in the past, has resulted in diabetic shock, weight loss, less muscle tone, loss of energy and overall weakness. Guess that beats to much GVHD, which could begin attacking vital organs. We'll keep you posted,

Mike

2010-01-08T10:19:00.002-05:00

Suzie's IgG was still low, 240 when it should at least measure 700, so she spent yesterday receiving another infusion of gamma globulin. Still dependent on walkers and wheel chairs but she's much stronger and more alert than at any time in December. I don't know where she finds the strength but I'm glad she's doing it!

Mike

2010-01-02T14:10:00.003-05:00

I've really been worried for the past month because Suzie's been unable to regain her strength and that alone was beginning to depress her. Had her blood drawn to test CBC and IgG levels on Thursday and learned that from a cancer perspective she is holding her own. Samples for IgG had to be sent out for analysis so, given the holidays, we've no idea where she stands here. Nonetheless, another miraculous recovery now appears to be underway. She was a little stronger yesterday and that trend continued into today. Last night, she got the first good night's sleep she's had in well over a month.

Many thanks to everyone because your prayers are helping!

Mike

2009-12-23T16:38:00.002-05:00

We started experiencing a big turnaround this morning as Suzie started coming out of a stupor she has been in since getting home last Thursday. Long story short, the move to fight GVHD with prograf versus prednisone was the uderlying cause of her lethargyt. They started out by giving her too much prograf too soon which gave rise to many side effects, none of them good, and she exhibited most of them. Most worrisome was an increase in sugar with both the prednisone and the prograf acting as catalysts. I thought she was headed for another stay in the hospital but she's pulled out of it and will be home for Christmas. Less prograf going forward, for a while, and much hope for continued remission of the cancer.

Merry Christmas to all,

Mike

2009-12-19T15:36:00.002-05:00

Suzie was discharged late Thursday because we can treat the GVHD at home as well as they can in the hospital. She's tired, although less so than the day she was admitted, but glad to be here where she's a bit more comfortable. Doctors are trying a new 'cocktail' to see if they can help control the GVHD using less Prednisone. They will check her blood levels on 12/21 and again on 12/23 when we visit with her oncologist.

Semper Fi,

Mike

2009-12-16T20:40:00.002-05:00

What a week! With Suzie's blood pressure stabilized and her immune system fortified, Graft versus Host decided it was its turn to mess with her. The rash appears on her scalp, face, neck, hands, legs and feet and she is suffering lots of pain and discomfort in many of her joints. Will she never get a break?

2009-12-14T21:10:00.003-05:00

As background to yesterday's post, Suzie's oncologist had ordered tests to determine the level of IgG antibodies in Suzie's body. FYI, we've since learned, via WebMD, that IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. In a normal person, you would expect to find 565–1765 mg per deciliter. The hospital determined that Suzie had only 41 mg per deciliter! Not good, so they decided to inject her with Gamma Globulin and give her immune system the temporary boost it needed.

Turns out that infusing Gamma Globulin can be tricky. She flushed heavily at first, so they stopped the drip for an hour, gave her an additional round of preparatory drugs, and began anew. She did not flush this time, but it appears that this round of injections, plus the high levels of prednisone she is taking, precipitated the rapid and dramatic rise in blood pressure. Not fun!

Anyway, she remains in the hospital and will probably be released on Wednesday. Her BP is still fluctuating, but has not gone above 170, and needs to be weaned from her IV medications and back onto pills.

Love to all,

Mike

2009-12-14T08:17:00.002-05:00

An event that seemed minor at first turned a little ugly Saturday afternoon when Suzie's blood pressure began rising. Went over 200 around 5:30 and climbed as high as 217. Several attempts with different medications to bring the systolic down failed and doctors were about to move her to intensive care when, at 2:30 Sunday morning, they decided to try one more medicine. Her systolic fell to 190 by 3, to 150 by 3:30 and to 142 by 4, thus ending the crises. We thank God because the last thing she needs is to suffer a stroke!

2009-12-11T08:01:00.002-05:00

Suzie was admitted to the hospital yesterday afternoon because she was lethargic and running a very high fever. This is not surprising given that this is flu season and that her immune system is compromised. The good news is that this is not the cancer, all of her red blood counts look good, and it is not COPD, the concentration of oxygen in her system is 98%. Doctors think we caught her in the early stages of a bacterial infection and are treating her accordingly. It does not look like she is in danger, we'll post again once she is released from the hospital.

Mike

2009-11-29T17:23:00.002-05:00

Happy to report that we had an enjoyable Thanksgiving, especially because Suzie's still in remission, still fighting rejection and still holding her own. We are already looking forward to the end of the month so we can see everyone again and celebrate Christmas.

2009-10-23T19:12:00.003-04:00

We're delighted to report that our meeting with Suzie's donor went well. We met him, and his parents, at a restaurant in St. Louis where Bruce and Suzie had well over an hour to both eat and learn more about each other. He's as kind as we hoped and is even willing to spend time counseling a donor brought into the fold by the drive Lisa engineered earlier this year. This is all so amazing.

Last week, we traveled to Boston to spend time with Lisa, to participate in a 'Light the Night' fund raising walk for the Leukemia and Lymphoma Society and to help raise funds for the MPD Foundation. Although back to back Northeasters forced us to cancel on the walk, Suzie and Lisa raised more than $500.00 selling hand crafted items donated for this purpose by friends and family and/or items they'd made themselves. All who participated by crafting the items sold or in the sales effort are pretty kind themselves!

Talk about courage: all this has been achieved in spite of an acute bout of graft versus host disease. Left untreated, this caused a significant rash as well as painful swelling and itching in both of Suzie's feet. Doctors were able to offset these symptoms through the aggressive use of Prednisone but these treatments led to the loss of body weight and muscle tone as well as a significant increase in her sugar levels. We're tapering off now and are prayerful that we won't have another bout with steroid induced diabetes.

We'll keep you posted!

Mike

2009-09-21T14:18:00.003-04:00

We've enjoyed good news and good times during the last couple of weeks. News that Suzie no longer needs to be on Bi-Pap therapy and approval from Blue Cross to replace a large, heavy, noisy oxygen concentrator with a lightweight portable that makes much less noise were followed by an enjoyable visit with Diana and Jeff, Suzie's sister and brother-in-law.

But the fun does not stop there! Suzie and I leave tomorrow for St Louis where Suzie will meet, and thank, the man kind enough and generous enough to donate the bone marrow products that have kept her alive since the transplant just over two years ago. Needless to say, this is EXCITING!

Love to all,

Mike

2009-08-27T16:50:00.002-04:00

Today we received a mixture of disappointing and good news from M D Anderson:

There is no sign of the donor's cells in Suzie's bone marrow and the number of cancer cells continues to increase. %$@&^%@.....

Revlimid is helping us manage this disease.

Signs of rejection continue and our transplant doctor is of the opinion that some of the graft is still active. He hasn't given up hope that Suzie might experience a rebound.

Suzie's alive thanks to the transplant and we've enjoyed many moments together that would have never happened were it not for the donor's act of kindness.

2009-08-24T16:32:00.002-04:00

Just wanted everyone to know that today, August 24th, marks the second anniversary of Suzie's transplant. MD Anderson considers this her second birthday, not too sure what to make of a 66 year old co-habitating with a 2 year old, but...

:-)

Mike

2009-08-17T21:47:00.001-04:00

Sorry it has been a while since you've heard from us but everything has been
slow moving, we don't want to raise false alarms or false hopes and it's hard to
know just when it is the right time to share. That said, here's where we stand
on both fronts:

Cancer

Twelve months after the bone marrow transplant, which took place in August 2007,
Suzie underwent routine testing to determine the success of this procedure. The
biopsy results indicated that no measurable signs of the donor’s DNA were
observed in Suzie’s bone marrow, devastating news because it meant that the
transplant was not leading to a cure of her cancer.

Suzie began taking a new medication, Revlimid, in November 2008. The role of
this drug is to manage her cancer and the results thus far are remarkable: each
of the all important red blood, hematocrit and hemoglobin counts improved
dramatically and have remained within their normal ranges for the past few
months. In addition, the persistent rash on her skin indicates that rejection
is still an issue and that the fight may not be over.

We just returned from Houston for the testing she undergoes every six months to
measure how much of the donor’s DNA is in Suzie’s bone marrow. When we asked why
there were still signs of rejection while there was no sign of the donor, we
were told that there have been instances, for other types of cancer, when the
donor ‘recovered’ and the transplant took root. Our transplant physician
reminded us that Myelofibrosis is a rare disease and that there is not a large
body of knowledge to draw on. He noted her attitude, courage and ability to
overcome the multitude of obstacles she’s encountered during the past three
years, then stated that there is a slight chance that she might experience such
a turnaround. Obviously, we are looking forward to the results of this month’s
biopsy and should have them in the next two to four weeks. We will post the
results on the blog,

http://nanisgreatadventure.blogspot.com/

as soon as we have them!

Finally, per our doctors, none of this would have been possible, were it not for
the transplant, because Suzie wouldn’t have survived this long had she done
nothing.

COPD

We discovered that Suzie suffered from this condition, attributed to smoking as
well as exposure to second hand smoke, six months after we discovered that she
had cancer. We did not focus major amounts of energy here because the fight
with cancer was all consuming. We’ve learned, the hard way, that we can not
ignore this disease: with little more than 40% lung capacity, she has a
difficult time exhaling enough carbon dioxide to keep her blood chemistry in
balance; doctors feel that she would not be able to handle the rigors of a
second transplant, and; she has no immune system and is a sitting duck for
infectious diseases, especially those impacting the respiratory system.

Overall, she’s a proven fighter that has overcome the odds four or five times
since this saga began. Your prayers and support have sustained her and we would
not be where we are without your help.

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2009-07-26T17:44:00.002-04:00

Had a little scare Thursday when Suzie's temperature suddenly spiked to 102.4, a fact we did not discover until we were checking into the pulmonary's office. Good news is that her oxygen and carbon dioxide levels checked out OK and her blood levels, from a cancer persepective, still look good. Treated her with levaquin and increased her prednisone to guard against respiratory failure and we were able to have a great visit with Kathi and Don Massey, good friends from GA, from Thursday PM until Saturday AM.

Mike

2009-07-09T18:28:00.002-04:00

Our reunion last week was physically demanding but I'm delighted to report that everything went well and Susie is not suffering any ill effects. In fact, she has moved on and is now busy creating a quilt for a younger friend pregnant with her first child. There are times that I wish I had her energy!

2009-06-27T19:07:00.002-04:00

Well, Suzie's been home for almost a month and her recovery is well underway. She now walks without the use of a walker and her energy level is high. She's managed to sew a pair of curtains for Lisa, continues working on her quilting projects and has been quite busy preparing for a visit from our son, daughter and grandchildren as well as all 16 members of her sister Diana's family. She's amazing!

Will post again after the 'reunion' and let you know how she held up.

God Bless,

Mike

2009-06-13T14:55:00.004-04:00

Today, Lisa, her good friends and The United Church of Christ in Ridgefield, CT sponsored/hosted an event to raise awareness of the need for more people to volunteer to donate blood products needed for transplant purposes. The good news: this event, which was held in Suzie's honor, resulted in 20 new volunteers!

You too can help by logging on to 'Be the Match™' and giving an amazing gift. Go to:

www.bethematch.org

Click on “join the registry”, then on “join now”!
To avoid the standard $52 fee you MUST use Suzie’s promo code: CM579

2009-06-09T09:11:00.005-04:00

Be one to save a life.

As you know, Suzie was diagnosed with myelofibrosis, a chronic malignant blood disorder, in September of 2006. As a result of her disease, she underwent a bone marrow transplant in Augustof 2007. This amazing gift from a then anonymous donor has enabled her to continue her fight and enjoy life with friends and family.

Although Suzie found help, 70% of people in need of a transplant will not go forward because they won't be able to find a matching, but unrelated, donor. With this drive, we want to honor Suzie and her donor by raising awareness of the need and recruiting more potential donors to the Registry. Be the Match™ and give an amazing gift.

www.bethematch.org

Click on “join the registry”, then on “join now”!
To avoid the standard $52 fee you MUST use Suzie’s promo code: CM579

2009-06-03T15:30:00.001-04:00

Thought it might be worth a minute to bring everyone up-to-date on Suzie's condition:

* She has been home for one week now and she is growing stronger, slowly, every day.
* Whereas of our focus for the past 2 and 1/2 years has been on her cancer, we have treated her COPD in a secondary manner.
* We now realize that the COPD is as dangerous to her health and well being as the cancer is. This is especially true because she has no immune system and she cannot yet receive any innoculations to protect her.
* She is still weak and uses a walker to get around the house. Knowing her, this will not be the case by the end of the month.
* Going forward we will be as active as we can because she wants to live life and I support her in this. This is the hard one: if anyone we are planning to visit with is ill, please let us know because it will be best if we do not visit with you. Suzie is extremely susceptible to bacteria and viruses and any further damage to her lungs will not be a good for her.

God Bless all of you,

Mike

2009-05-31T09:21:00.001-04:00

Suzie came home late Thursday afternoon and is slowly but surely regaining her strength. Thank God she's a fighter!

2009-05-27T21:10:00.001-04:00

Suzie's is recovering nicely and it now looks like she will be coming home tomorrow.

Alleluiah Amen!!!

2009-05-26T19:18:00.003-04:00

This crises is over! Nurses are removing all kinds of plastic tubing from Suzie's body and physical therapy is helping to assure that she has enough body strength as all of us prepare for her return home on Thursday or Friday of this week. The major change going forward is that she will now have a machine to help clear the carbon dioxide from her lungs as she sleeps.

Three years ago we thought Suzie was reasonably healthy. In September 2006, we learned that she had a rare cancer that was thought to be untreatable. In March 2007, we learned that she also had COPD but we never thought that this disease was life-threatening. What this experience has taught us is that the COPD, which we were not worried about, is as much a threat to her survival as is the cancer. And that really sucks!!!

Going forward, we plan to continue spending time with friends and family and to living our lives to the fullest extent possible. We must avoid crowds and we must be extremely diligent when it comes to washing our hands and to avoiding those who are ill.

Mike

2009-05-24T21:09:00.002-04:00

Another turnaround yesterday as Suzie's CO2 level dropped to 49 and the Doctors concluded that they would not have to attach her to a respirator. (Allelulia!!!)Still no word on the blood cultures so we have no idea what caused this episode in the first place.

She's not out of the woods, yet, but the trees are thinning out and, if all goes well, she may be on her way home this coming Thursday. Then, hopefully, we can have another 8-9 months of remission and the joys that come with it.

God Bless all of you,

Mike

2009-05-22T22:25:00.001-04:00

Suzie’s carbon dioxide levels, which were 70 (twice the normal level of 35) when first measured, were lowered to 51 yesterday so Suzie was transferred from the critical care unit to a standard hospital room. Regarding the cancer all of her blood work, with the exception of her white blood count, is within the normal ranges. We celebrated our good fortune over lunch today before learning that the CO2 had jumped back up to 59 and that she is not out of the woods. This means that she will remain in the hospital and continue respiratory treatments over the Memorial Day weekend. Her spirits are good and she continues fighting both the COPD and the Cancer as hard as she can. It’s good thing that living with me for 40 years did much to prepare her for these encounters! (Thanks Craig.)

Next test of her CO2 levels is scheduled for tomorrow morning. We’ll use the blog to keep everyone advised of significant changes. This document can be accessed at the following URL:

http://nanisgreatadventure.blogspot.com/

Just when you thought....

2009-05-20T19:57:00.002-04:00

Suzie and I have had a marvelous 8-9 month period where she was in remission and we were really able to get out and enjoy life. Most recently, we traveled to Atlanta to visit with Dave and his family and to participate in Gwinnett County's Relay for life. This is a huge fund raiser for the American Cancer Society with Gwinnett County's being the country's largest. (These fundraisers, Rebecca, Cindy, fellow teachers and all the students are phenomenal!) Suzie walked the 'Survivor's' Lap, a very emotional undertaking, and did herself proud. From there, we journeyed to Savannah, Charleston, Parris Island and Beafort and celebrated our 40th wedding anniversary with her sister Diana and her husband Jeff.

Unfortunately, somewhere along the way, Suzie managed to acquire a new infection which resulted in an acute COPD event. She was inhaling enough oxygen but her lungs were not ventilating properly and she was not exhaling enough carbon dioxide. This resulted in a loss of strength and energy and made it almost impossible for her to breathe in. Long story short, we went to the emergency room this morning and she was admitted to the critical care unit where she will remain until they can remedy the situation. Please keep her in your prayers!

Mike

2009-05-02T18:58:00.000-04:00

We have not been aggressive about posting to this site recently because Suzie is more or less in a state of remission and life for the past eight months has approached normalcy. We're taking advantage of the break and are squeezing as much living as we can into this time period. In April, we hosted a reunion of good friends we made during the short time we lived in Plymouth, got together with our son Dave and his family for Easter and traveled to Boston to visit with our daughter Lisa, her friends, and good friends of ours from our days in Massachusetts and Connecticut. Next week we'll travel to Georgia to walk in the Relay for Life sponsored by Dacula Elementary School, then venture off to Savannah, Charleston and Beaufort to celebrate 40 years of marriage with Suzie's sister and her husband.

Life is good

2009-03-22T12:16:00.000-04:00

Suzie and I celebrate our 40th wedding anniversary today and are we happy or what!!!!

:-)*Infinity

Mike

2009-03-12T18:11:00.000-04:00

Suzie had a blood draw today and we learned that, for the first time since we discovered she has cancer, with the exception of platelets, all of her blood counts are within the normal range! This is WONDERFUL news! Her cancer may not be gone but God has blessed her because, for the present time, it is under control.

:-)

Mike

2009-02-25T08:15:00.000-05:00

We spoke with our nurse at M D Anderson yesterday and learned two things: there are no longer any donor cells in Suzie's blood and the Revlimid she is taking seems to be an effective agent for managing her cancer. Although we are no longer looking forward to the cure that the transplant promised we are thankful that we pursued this course. Suzie is alive, her quality of life is much improved and there is hope that the Revlimid, and other potential treatments, will help her stay this way.

Best to all of you,

Mike

And the beat goes on...

2009-02-07T08:12:00.000-05:00

Suzie's strength is holding and her blood work continues to improve--that shot she got last month and the Revlimid she is taking appear to be helping. We're on our way to Houston next week and the testing they do there will tell us if the donor's cells are on the rebound. We should learn the results of these tests by the end of February.

God Bless,

Mike

2009-01-22T18:05:00.000-05:00

We received good news on Suzie's blood-work today: her WBC continues to fall, there has been a dramatic decrease in her platelets and, for the second straight week, her RBC, HGB and HCT edged upward. Looks like the Revlimid is effective and that shot she received two weeks ago is doing its’ job.

We aren't going overboard, given the ups and downs she's experienced over the past two and one half years, but we are savoring the moment!!!

:-)

Mike

2009-01-15T21:20:00.001-05:00

We learned today that Suzie has the same amount of fluid in her lungs as she did last week, that her red blood count rebounded somewhat and, at present, she is not in need of a transfusion and that her lack of energy can be attributed to the chemotherapy drugs she stopped taking a week ago.

She is starting her second round of chemo tonight and we will return to the Oncologist next Thursday so they can determine how the drugs are affecting her blood.

Until then, God Bless!

2009-01-08T18:22:00.000-05:00

Greetings!!

We’re delighted to open this posting by saying that we had a FANTASTIC time in November and December celebrating birthdays and holidays with our children, grandchildren and good friends. Our only regret is that everyone who reads this entry was not there to celebrate with us!

Unfortunately, Suzie is encountering new road blocks: an upper respiratory infection that a z-pack was unable to conquer and a sudden, and significant, decrease in her red blood count.

The fear with the infection is that it will go into her lungs and further inhibit her ability to breathe. We are hoping that a weeks worth of Levaquin will resolve this issue.

The fear with the decrease in her red blood count is that the decrease is permanent and that she will be dependent on blood transfusions because she will no longer be able to produce red blood cells on her own.

We are both praying that the Levaquin works and that the sudden decrease in red blood cells is a temporary phenomenon due to the upper respiratory infection and/or the recent introduction of new drugs to her system.

We will keep everyone posted, as change occurs, on our blog:

http://nanisgreatadventure.blogspot.com/

God Bless,

Mike

2008-12-02T19:24:00.000-05:00

We had a wonderful Thanksgiving! Lisa was with us for the entire week and David and his family were able to join us from Wednesday through Saturday. We were crowded but the visits were good and we're thankful that we had this opportunity to celebrate together. In addition, we learned on the Friday after Thanksgiving that Blue Cross is approving the use of Revlimid for Suzie until November 2009. Given that the transplant failed, this renews our hope that we can manage the disease, not wait for it to run its course.

God Bless, and have an enjoyable Christmas and New Year!

Mike and Suzie

2008-11-05T20:10:00.000-05:00

We're about to leave for Chicago so Suzie can visit with her sister, nieces and their families. Before we get underway I thought you'd like to know that Suzie's doctors decided that now was not a good time to take some peripheral blood and see if there is any change in the donor/patient relationship. Instead, they want to add the drug Revlimid to her daily list to see if this medication will help her fight the cancer. Problem is that Blue Cross will not authorize the use of the drug because it is not on the FDA's approved list of drugs that can be used to combat Myelofibrosis. Trick now is for the doctors to find a drug that can help!

We'll keep you posted,

Mike

2008-10-18T11:37:00.000-04:00

Although graft versus host continues to torment Suzie she is active, alert, engaged and otherwise behaving s if nothing ever happened. Doctors are taking additional steps to help her manage the cancer, which is still active, so she will soon start taking the drug Revlimid, a derivative of Thalidomide . Additional blood will be drawn on October 30th so doctors can determine how much change has taken place in the donor/recipient relationship. We're praying that the increased graft versus host is an indication that the donor is making a comeback. We should have the results of these tests in late November, early December.

Love to all,

Mike

2008-10-06T08:27:00.000-04:00

Just thought that everyone would like to know that Suzie is pretty much holding her own these days. The battles with graft versus host continue, and she's had a couple of minor colds, but we've also been able to help a good friend celebrate her wedding and another good friend celebrate his mother's life. Next big test should take place in early-mid November and we hope to have the results i early December.

Love to all,

Mike

2008-09-14T15:59:00.001-04:00

Suzie and I just returned from 10 days in New England, our first pleasure trip of any magnitude in over a year. We visited our daughter and good friends of all ages from our days in Ridgefield, Connecticut and Plymouth, Massachusetts: Kay, Ed, Karen, Kristen, Leo, Cary, Len, Irene, Marabeth, Jen, Jack, Susan, Gerry, Pat, Gary, Sherry, George and Ellen. These people lifted our spirits and the occasion(s) were reminders to us as to just how important they and all of our friends are to us and we are thankful that God has placed all of our friends in our lives.

2008-08-28T10:12:00.000-04:00

Our transplant doctor has responded to our key questions:

" Tapering her prednisone/tacro will hopefully rescue at least some of her graft, provided it is done fairly quickly over the next 3-4 weeks. It would be important to repeat the donor/host blood and Jak-2 tests sometime in late October or November, and we could potentially doing so by having a blood sample shipped to us (i.e. she would not necessarily have to come). Hopefully that will show a reversal of the trend.

Her prognosis is unclear at the moment and will ultimately depend on what happens in the next few weeks/months. That said, it is clearly significantly worse than it was just six months ago. Unfortunately, in view of her general condition, a second transplant is not a realistic option (i.e. too risky), but other treatment options can be discussed, and they would most likely be done locally."

This means that we have to let Suzie suffer GVHD to an even greater degree. This is hard because it leaves marks on her skin and it affects her vision and her joints It hit so hard last April that she was unable to sew, or hold cards in her hands. Even eating was a challenge. If the GVHD gets too aggressive, her kidneys and liver are exposed to the degree that it could be life threatening. But doing nothing exposes her to the cancer, which is also life threatening.

Our prayers are that the donor cells make a comeback and that our doctors are able to control the negative aspects of GVHD.

2008-08-25T23:25:00.000-04:00

The objective of the stem cell transplant is to replace Suzie’s bone marrow with healthy bone marrow contributed by the donor. This goal will be achieved when the donor’s pattern represents100% of Suzie’s DNA.

When we left Houston last November, the donor’s pattern represented 97% of Suzie’s DNA and, needless to say, we were elated with her progress. But time and all that has happened since we left Houston have affected her negatively and it is beginning to look like the transplant may not work: the donor’s pattern on August 14^th represented 5% of Suzie’s DNA and we continue seeing signs that the cancer is actively present in her body.

The good news is that GVHD remains active, meaning that the donor cells have not given up, and her red blood counts are high enough that at the present time she has no need for transfusions.

At this moment we’re not sure what our status is or what to expect next. Our transplant doctor finds it difficult to offer a prognosis because Myelofibrosis is so rare and because so few people with this disease, especially in Suzie’s age group, have undergone the transplant. We’ve asked what our options are should the transplant fail but he hasn’t had time to respond to this question.

On another note, Suzie just had a most enjoyable weekend: she went boating with Mike on Saturday, attended church services and shared breakfast with good friends Sunday morning, then spent Sunday afternoon at the movies and at dinner with a different group of friends.

The upcoming weekend will be enjoyable because Dave, Kelly and the grandchildren are visiting and the pleasure will continue next week when we travel to Boston to visit Lisa and to Martha’s Vineyard to visit good friends from our days in Plymouth.

God Bless!!!

2008-08-16T16:30:00.000-04:00

We visited M D Anderson Cancer Center in Houston on Thursday August 14^th. We learned, if we are interpreting the data we have correctly, that the donor comprised 61% of total DNA in April 2008 versus 97% in November 2007. We are hopeful that this trend has now reversed but will not have the current picture for a few weeks. We will keep you posted! On the other front, Suzie’s WBC and Platelets are on the rise. This is, in part, due to the change in medications used to fight the GVHD which is now affecting Suzie’s skin, joints and vision. The plan now is to continue visiting our local Oncologist every other week and to return to M D Anderson in February 2009.

In the next few weeks we will host Dave and his extended family for the Labor Day weekend, visit with good friends on Martha's Vineyard with Lisa in her new digs in Boston. Lobster anyone? :-)

2008-08-06T20:43:00.000-04:00

We learned today that the swelling in Suzie's groin was caused by a hernia, which was removed, not by one of her lymph nodes. This is good news because the swelling is not related to the cancer and because she is rid of an issue which could have had more serious consequences in the future.

God id good!!!

2008-08-03T18:05:00.000-04:00

The battle versus GVHD continues! Mid-week Suzie's feet turned very red and swelled so much that she had/has blisters on her toes and on the bottoms of her feet. It is difficult for her to walk, at the moment, and impossible for her to put shoes on her feet. We are thankful, thus far, the disease is attacking her joints and is not attacking her organs.

There is a chance that the increased white blood and platelet counts, plus the swelling in her lymph node, are indications that Suzie is also battling the remnants of the cancer. We are hopeful of getting a better fix on this with the biopsy scheduled for this week and while in Houston on the 14th.

A visit over the weekend from Dave, Kelly and the grandkids lifted both our spirits because Chris, Jon and Ali openly express their concerns and love for her. This says a lot about their home life, their dispositions and the parenting they receive. We are proud of all three, especially Chris who is almost a teenager but does not behave like the ones most parents fear.

God Bless!

2008-07-24T10:00:00.001-04:00

Suzie is stronger but her fight against graft versus host disease, i.e., rejection of the donor's bone marrow, continues. The rash is spreading, there is redness, swelling and pain in her wrists and hands and one of her lymph nodes is enlarged. We will have that biopsied on August 6th and return to Houston in mid-August for a more thorough exam by doctors at M. D Anderson.

On August 24th, 2008 she will celebrate the first anniversary of her transplant, also referred to as her 'second birthday.' She has come a long way in one year and we are thankful to God for his Grace, good medicine and your support.

Mike

2008-07-11T14:01:00.000-04:00

Suzie continues gaining strength: she's driven the car and spent two days on the boat over the weekend! Her next goal is to regain enough lung capacity to allow doctors to take her off the oxygen. We see the pulmonary team next week and we'll let you know what they tell us.

Lisa discovered that the settings on the blog would only allow Google users to post comments. We changed the setting to allow anyone who wishes to post a comment to do so. Sorry 'both that!

:-)

2008-06-30T20:01:00.000-04:00

Today's visit with Doctor Martin went well! She is stronger, her weight is up to 110 pounds, from 85 pounds in late May, and she appears to be overcoming anemia on her own. (No transfusions!) She will not have her blood drawn again until 7/15 and she will not see Doctor Martin again until 7/28. We return to M D Anderson in mid-August to see how much progress she is making against the cancer. It will be late September before doctors have the results of these tests.

2008-06-23T15:41:00.001-04:00

Suzie is stronger and a little less anemic today. No news is GOOD news!

Mike

Tuesday June 17th

2008-06-17T10:03:00.000-04:00

As a result of our weekly blood draw yesterday we learned that Suzie is anemic and may need a blood transfusion. We are hopeful that her condition will improve during the week but will seek help in the event she does grow weaker.

The rash on her arms is spreading, due to graft versus host disease, so her doctor at M D Anderson is reintroducing the drug Prograf to her regimine.

On a positive note, she is slowly getting stronger. Her attitude is great, she looks better than she has since last January and she has lots of energy. Your prayrers are working!

:-)

Mike

September 2006 through June 11, 2008

2008-06-11T09:56:00.000-04:00

Suzie’s ‘great adventure’ began in September 2006 when we learned she was suffering from cancer. At first we believed that she was suffering from Chronic Myelogenous Leukemia, a disease that is manageable with medications. A month later we learned later that this diagnosis was based on a ‘false positive’ reading for the Philadelphia Chromosone and that she was suffering from Idiopathic Myelofibrosis, a rare cancer that affects two in one million people for which there is no known cure. The disease is so rare, and Suzie's condition was such, that we were referred to M. D. Anderson, the country's leading Cancer Center.In November, doctors at M. D. Anderson confirmed this diagnosis and described the plusses and minuses of the clinical trials that were available to her. Suzie enrolled in a trial designed to test the effectiveness of a derivative of Thalidomide in the fight against this disease. She began treatments in January 2007.In March, Suzie contracted a severe case of pneumonia. This event weakened her so much that she now needed blood transfusions to maintain life. She withdrew from this trial to rest and to pursue other trial options available to her. She chose to undergo a bone marrow/stem cell transplant, her only real chance to eradicate the disease from her system. The procedure was scheduled to take place in June.In May, however, surgeons were forced to remove her spleen. It had absorbed the bulk of the twenty pints of blood Suzie received during April to help combat the cancer and, in the process, grew to be as large as a basketball. Her prognosis was day to day. When she left the hospital she was extremely weak and 40 pounds lighter than six months earlier!The stem cell transplant took place in late August and Suzie's recovery began. Although she suffered a brief bout with Graft Versus Host Disease, aka rejection, she did so well that she left the hospital, and we left Houston, two weeks earlier than anticipated! Doctors in Houston and in Knoxville referred to her as ‘their miracle’.Suzie's recovery continued until late January when bacteria bypassed her suppressed immune system and she contracted a life threatening case of pneumonia. Quick work and strong medications, including steroids, saved her but she was on oxygen and in a weakened state when she returned home. As time progressed, she grew weaker and lost more weight. Her wrists began to swell and turned very red.By mid-April, she was no longer able to use her hands and she now weighed less than 100 pounds. We returned to M. D. Anderson and learned that the host/donor relationship had not changed since last November and that the cancer was under control. We also learned that she was fighting another case of graft versus host disease. Doctors added a heavy dose of steroids to her medication regimen and, by the end of April, we saw a great deal of improvement: she weighed more than 100 pounds, her energy had returned, the swelling and redness in her wrists was gone and she regained the use of her hands.In mid-May Suzie began losing strength in her legs and doctors decided to taper her off the steroids in rapid fashion. By the 23rd, she was unable to get to a standing position without help. Her weight dropped to 85 pounds. On the morning of the 27th she was nearly comatose and, once again, we rushed her to the hospital. Her blood work indicated that her potassium was dangerously low and that her glucose was dangerously high. She was now fighting steroid induced diabetes, a condition we were told could become permanent. The treatments she received worked and Suzie returned home in early June. She is still on oxygen and is undergoing physical therapy to regain the strength she lost in her legs. On the other hand, she is gaining weight, her potassium levels are normal, her glucose has settled into an acceptable range, her energy is returning and her Oncologist is optimistic that the diabetes is a temporary condition that will disappear once the steroids are out of her system.